Tonight's picture was taken in June of 2009 in the PICU. Mattie was hospitalized for a sternotomy. A surgical procedure in which his chest was cut open in order to access his lungs, and remove 9 tumors from them. We weren't sure how Mattie would handle that surgery, but he far exceeded our expectations. In fact, within a day or so, he was up and playing. Mattie and I disliked his respiratory care therapists, so one day, his PICU nurse, Brenna, devised a Sponge Bob game in which Mattie would have to use a straw and blow Sponge Bob and his pal, Patrick, across a pretend lake. In this picture, you can see Mattie and I competing. Mattie usually raced with Sponge Bob (and WON!), and I was left being Patrick. You can see the orange sign by the basin, that was the finish line to the race. Mattie's HEM/ONC and PICU nurses got to know and understand him well. If Mattie assessed that you cared and were trying, he usually met you half way. Brenna's ingenious breathing exercise game was a lifesaver, and I have no doubt that Mattie inspired many people to think outside the box when caring for him.
Poem of the day: The Anniversary by Charlie Brown
The anniversary of your passing is tomorrow
And the week leading to this has been full of sorrow.
I've reread what I wrote and all the parts,
That caused you pain and broke my heart.
I can hardly believe the day is here
Somehow we've made it through this year.
We're planning special remembrances of you
And how I'll get through them I haven't a clue.
I know my friends are praying for me,
Especially those who with me can't be.
I feel your wishes and prayers I do
And my thanks go out to each of you.
For remembering Mattie in your own way,
And sharing my sorrow on this anniversary day.
As we are on the eve of Mattie's one year anniversary, today was a busy day. On our journey to remember Mattie tomorrow, Peter and I have decided to do the following things:
1) To attach a butterfly wind chime to Mattie's tree (Completed on Sunday!).
2) Have our blog community write reflections to me about Mattie's story and our journey so that they can be posted on September 8 (THANK YOU for taking the time to do this, and for being so honest and thoughtful in your reflections!).
3) To wrap seven (one for each year of Mattie's life) Lego gifts to bring to Linda (Mattie's childlife specialist at Georgetown University Hospital) on September 8, in honor of Mattie. Mattie loved Legos, and we would like to bring this therapeutic tool to others at the hospital on this day of remembrance.
4) To write an email to each of Mattie's nurses, Linda (Mattie's childlife specialist), Jenny (Mattie's art therapist), and Jessie (Mattie's art therapist) acknowledging their incredible care of Mattie and their importance in our lives (Completed tonight!).
5) Host an informal Mattie tree gathering with Team Mattie on September 8. At the gathering, attendees will be able to hang an origami praying crane to the tree. My dear friend, Junko, and her mom are busy making cranes for this event. Many of my loyal readers will recall that Junko and her mom made Mattie a beautiful 1000 crane mobile, that would hang on Mattie's IV pole during each hospital admission!
Peter and I received a beautiful email today from the Magic Man (Bob Weiman, Mattie's head of the lower school). Bob let us know that he spotted the butterfly wind chime on Mattie's tree today. Specifically Bob said, "As I walked out of the building today Mattie said, "hey, look up here and don't forget about me!" Now I have both seen and heard the chimes and they are indeed beautiful. I look forward to more windy days!" Bob also was kind enough to attach a video to his email, and within the video we could see and hear the angelic sounds of Mattie's chimes. They are haunting really, and catch your attention. After hearing the video, I was concerned that the sound was so loud that it may be distracting to the students and faculty. When I told Bob of my concern, his response was, " If it is a distraction, it is a beautiful and important one as it was for me today."
This afternoon, I got it in my head that we needed cupcakes at tomorrow's Mattie tree gathering. Peter and Ann were encouraging me to buy the cupcakes, but I wasn't happy with this idea. I wanted to bake them instead. Why? Most likely for many reasons, but first and foremost because I wanted to bake something that Mattie would have loved. Mattie loved cupcakes, vanilla ones, with vanilla frosting. As so many of you know, Mattie strongly disliked chocolate, unlike his mother. But cupcakes became symbolic of Mattie's recovery. He and I made a deal with each other. For each step he took (after his limb salvaging surgeries), and for his active participation in physical therapy, he would earn a cupcake. There were weeks, I would literally come to the hospital with a tray of cupcakes I baked at home. Mattie loved when I transformed the vanilla frosting into pretty pastel colors, specifically pinks and blues. So today, I landed up baking six dozen cupcakes and frosted each one. I made lavender, pink, blue, green, and white frostings. Certainly I could have bought cupcakes, but in honor of Mattie, I wanted to make 'Mattie cupcakes' for his day of remembrance. This evening my lifetime friend, Karen, emailed me to find out why she hadn't heard from me most of the day. I told her I was in the midst of baking, and had cupcakes ALL around me. Typically Karen advises me to take care of myself and not overdo things (as I classically do!), but when I told her about my baking project her response was, "Actually, I think making cupcakes is very therapeutic. It is a way to expend some energy. Smells good. To have a result that gives others pleasure and a way to give to those who gave to you, and to represent mattie in a sweet way. Literally!" As I told Karen, I couldn't have said it better!
These pink and white cupcakes were Mattie's favorites! We certainly went through dozens of them at the hospital!
In honor of Mattie's pastel frosting preferences, I made green, blue, and lavender frostings!
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September 7, 2009 Blog Posting
Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an omnious sign today!
Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!
Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (childlife specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well, and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!
We want to thank Tamra and Liza for bringing us breakfast this morning. We so appreciate your families supporting us! We also want to thank the Fortune family for a nice lunch. Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.
Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.
Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.
It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.
We would like to thank Tamra for a wonderful home cooked dinner tonight. Tamra you are way too generous with us! Thank you for the hug and the support today. My head is pounding tonight, my heart is heavy, and I am truly and deeply saddened over the pending loss of Mattie. Ann, is headed back to spend time with us at the hospital this evening, and despite losing her brother to cancer almost two years ago, I appreciate and value her commitment, support, and love she has for us in order to be able to walk through this with us now.
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I would like to end tonight's posting with four messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I can hardly believe the year you have had. Nor can I believe the year before that. Your struggles have made each of us reflect upon our own perception of what a "struggle" truly is, and your ability to find strength in each day has inspired us. Know that I am thinking of you this Tuesday and every day."
The second message is from my friend, Charlie. Charlie wrote, "I wish I could be there for the memorial at Mattie's tree tomorrow. I suggest that for those of us who can't be with you, that we take our own minute of silence at 4PM EST to remember him. Tomorrow at sundown also marks the beginning of Rosh Hashanah and begins the holiest time on the Jewish calendar. We provide names of those who've passed to be remembered by the congregation on Yom Kippur and I am sure that Mattie will be in many heart as the Kaddish is read. I know that you are in a very tough place but I hope that some healing has begun for you and that you will be able to keep going and find meaningful work this next year that incorporates your skills and abilities. As I practice both today and tomorrow, I will send you my strength of purpose so that you may make it through these days. Know that many are thinking of you, praying for you now. I hold you lovingly and gently in my thoughts."
The third message is from my friend and colleague, Nancy. Nancy wrote, "I am sure that your mind is going a mile a minute thinking about today and tomorrow. Although memories connect us with our loved ones, they also remind us of the pain and suffering that took place. Rereading how Mattie responded to his last hospital stay speaks volumes of the love within your family. I remember our discussions around Mattie not returning home. He did think of Peter and you till the end. Your telling him a story was great Mommy Pain Killer! It was comforting at a time when little else was. I hope you remember that too today. I wish I could be with you tomorrow standing at the tree. It is a lovely way to remember this anniversary. It will be a place where everyone who wants to be with your family may come. Then Peter and you can have alone time. Just like Mattie, you are thinking of others who are special in spite of your own pain. I send you hugs today and my love."
The fourth message is from my friend, Amany. Amany wrote, "As September was approaching, I found myself thinking how excruciatingly hard the upcoming 1st anniversary of Mattie's death would be. It felt daunting and I kept thinking about you and Peter--wondering how you were dealing with this. I thought how do you honor and remember that precious, precious soul on what was the most tragic day of your lives just a year ago? It doesn't make sense and yet I know you have to find a way to deal with it. I think the gathering at the school is a lovely idea and one that Mattie would have loved. I just re-read the entry from last year that you posted and was in awe all over again of what you managed to do during the most horrific time of your life. You and Pete have an indescribable courage and strength that is truly hard to put into words. The blog has been a gift to everyone around you. The collection of entries that has chronicled your life, pain and, journey through Mattie's illness and death has honored Mattie in a way that no one act can compare to. It is a poignant, painful and hauntingly beautiful literary masterpiece that captures what it is to be human, love so deeply, grieve so intensely and find faith and hope in the midst of despair. Vicki--you are an example for us all. God bless you and Pete and Mattie. I wish I could say something to make this better. But I can't. Please know that you are loved, admired and my thoughts are with you, tomorrow and always."
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